Diagnosis is a turning point, not a beginning

Friday November 21, 2014

“You have Parkinson’s Disease.” There is no good way of getting this news. Even as the words enter your world they seem to rearrange it irrevocably and permanently for the worse. How can life be the same once the words “Parkinson’s Disease” attach themselves to you? A chorus of emotions crescendo. You grieve your old life and dread the bleak future you are informed is inevitable.

And yet, beneath that, something stirs. You knew for some time all was not quite right. Things that seemed unrelated swirl into a new pattern. The shake in your leg, minor difficulty with swallowing, disappearance of the swing of your arm when walking, fit into a larger whole. Suddenly there is a term for these mysteries: Parkinson’s Disease. At least you now know what you are up against. This is a landmark moment, but not the beginning.

The current state of the art technology allows neurologists to identify Parkinson’s Disease only after it has been at work on us for years. Researchers now know it lurks in our guts and slowly erodes our sense of smell for perhaps a decade before the tremors, stiffness and slowness considered the hallmarks of the disease become apparent and diagnosable. Even more disturbing, these symptoms only appear after 60 to 80% of the cells in the part of our brain that make the dopamine that signals our muscles to move are out of commission.

This puts the day of diagnosis in a different context. It’s difficult to not think of diagnosis as coinciding with the start of your disease, as the point your troubles began. But since diagnosis only comes with the onset of identifiable symptoms, symptoms that only appear after significant damage has already been done, diagnosis is not the disaster it seems. Instead, it’s a wake-up call. Disaster would be hitting the snooze button.

The disease that threatens your future has already been shaping your past. But now you are aware. What you say good-bye to with diagnosis is not your health - that was under assault years ago. What you really bid farewell with diagnosis is ignorance. And while ignorance is bliss, knowledge is power. Which of these two is more useful to you right now?

In the days when there wasn’t much you could do about Parkinson’s Disease, you could make a shaky case for blissful ignorance. It’s much harder now, when early interventions have been shown to increase your quality of life. We have knowledge and tools available to improve our ability to make better lives for ourselves that weren’t available just ten years ago. We now know much more about the major role that exercise plays in moderating symptoms and possibly modifying disease progression. We now have the surgical intervention of Deep Brain Stimulation. There is a raft of new approaches on the horizon, like medicines that work outside the brain’s dopamine pathways and even a possible PD vaccine.

Whatever value present or future interventions hold, you can’t take advantage of them unless you know you need them. Ignorance is looking less like bliss and more like misery. Stupid and blissful is at least a little tempting. Stupid and miserable has no allure at all.

The discussion can’t take place until you are diagnosed. So maybe your diagnosis day wasn’t one of the worst in your life, the day your future jumped the rails, the day the moon and stars fell on your head. Maybe it was the day you began to pry them off. That’s a pretty good day.